On the ‘eve of a listening session

Tomorrow, I have the responsibility to listen, learn, and react to the voices of nearly 200 people with intellectual disabilities and their allies and mentors. I will ask them to share their perspectives, their histories, their vision, and their opinions.That is a lot to ask of people, and tonight, I work to prepare myself for this. I will try to be a good servant to their voices and their experiences.  I will faithfully record their voices, words, and intent as best I can.  I will share those voices to those with power to make change and move towards the imagined future they will speak of.

The challenges are significant as a person with automatic status amongst many Indian people by default of the geography I happened to be born into. This is the kicker for me – most anything I saw or do seems to commands respect and attention.  My ethnicity as American of European descent brings automatic legitimacy, or at least interest, to whatever my message is, and that may not be fair or helpful much of the time, but it is the reality. It is also a reminder about the realities of having a disability in India, or just about anywhere in the world. It’s not fair that people think they know everything about you just because they think they know one or two facts about your birth, or your condition. But it also just is. The fact of having a disability – particularly an intellectual or developmental disability, makes people think they know everything about you.  Not right, not fair, just is.

Our work to change the future depends on us recognizing the injustice, not of disability itself, but of the judgement and stereotype that is so entrenched amongst most people. Tomorrow, it is my commitment to keep myself as small as possible, so the people I am listening to get to be big. That is only fair and only right.

 

 

 

 

Making It Real

The 24th National Parents Meet in Jalandhar, Punjab was a potent mix of passion, gritty determination, and celebration. From across India, several hundred family members of people with developmental disabilities came together, along with their sons and daughters, to meet, plan, share, learn, and celebrate the hard-won gains they have made. As had been the case in most places, it is the coming together of the parent groups in a common voice  which has formed the backbone of the advocacy movement for people with intellectual disabilities.

The disability movement is India is a smaller community than you might think, so it was no surprise for me to reconnect with people I had met at other events all across India.  In this way, I had a small taste of the kinds of strong connection that these families have for each other through their long and faithful work towards creating a world where their children have access to the good things of Indian life. Governmental leaders and professionals came to speak and listen, and were respectful to parent leaders, recognizing their natural authority and their experience.  Generational leadership changes within the parents association, the self-advocacy movement, and the field itself speak to the change that is in the air for India, for the many people with disability present at the gathering, and for families.

As an auspicious sign of “making it real”, which was the conference theme, a young man with disability who was present for the conference was introduced to the Pro-Chancellor of the University where the event was taking place. In the course of that very day, he was interviewed, offered, and accepted a position at the University which includes housing and full benefits.  Now that speaks to the power of community networks, the importance of people with disability to be in regular life, and the potential that typical people can and will open doors to welcome people with disability when given the opportunity.

 

 

Make a little room

 

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It is tempting to think of big sweeping changes as we consider our work of helping a society learn to make space for everyone.  Big plans for our initiative were explored and crafted out of our hearts and minds 9 months ago in New Delhi as we imagined ideas towards inclusiveness would spread across India, policy would shape itself around such ideas, and we would be a part of the change movement that is a part of India in so many diverse areas. Indeed, it is an exciting time to be doing this work, in this place and at this time. As we re-gather with our planning group nearly a year later, I am reflecting on all of the work that has been done, and discerning which is of biggest import.

We know that for ideas to take root and change to happen, work must be done on all 4 levels – societal, community, family, and individual. It is a bit of a  rush to think about the impact one’s work may have on the very fabric of society, and indeed, the change agentry work being done  alongside The Hans Foundation may have just such an impact. However, the impact of a good idea that has the capacity to change the lives of an entire group of people must resonate in the lives of individual people and their families for us to grasp the tender core at the heart of the matter. For, in the long run, and also in the short run, the experience and impacts of having a disability in Indian society is experienced by individual people.

A few months ago,  a young man of 21 years of age gathered with a small group of people who care deeply for him to think about his future.  He is a man who speaks little, and many would say he is impacted by autism in significant ways.  He was accompanied by his parents, his teachers, and a number of others interested in beginning to explore and create a positive and possible future alongside him.  A number of commitments were made, as we imagined this young man developing a network of friendships which will expand his resources, and help him transition into the role of an adult son, with his own relationships. A vision of a young man who is has a bit of an adventurous spirit – who we can see as a hiker, a trekker, a music lover with an awesome set of headphones and an eclectic playlist.  A man who has friends and relationships with people outside of his family, and has a bit of a life outside their warm and strong family foundation.

At the conclusion of our work together, his mother spoke movingly of how it was a risk  thinking about her son having a real future, and how hope had stirred again inside her.    A month or so ago,  she sent me a quick email because she could not wait to share the news until our next planning circle meeting. Her son had spent 30 minutes visiting with a neighbor without either of his parents present.  A first in many, many years. A small thing, but not so small either. It speaks to the potential for the world to shift just a bit to make some space for this young man.

I will hold this gem of an idea with me over the next few days of high-order planning and trying to work on a systemic level.  It only matters if we can get the world to move a bit.

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Ghost in the Machine

Institutions have been on my mind.  Their definitions, their characteristics, their meaning, their impacts.  Hard and wrenching images and scenes from the hellish large institutions I have seen too many of here in India vie with the images of hope and possibility of families who want good lives for and with their children- both keep me up at night. I had an illuminating talk with a colleague who reminded me of the problem of being dogmatic about issues like institutionalization in a society which you do not, and will never, fully understand. Fair enough. Upon my return to the US, I opened up the latest issue of the SRV Journal, and there before my eyes was Martin Elks’ article about institutions and their features, especially comparing the ‘new’, bright and shiny institutional models being pedaled in the United States with the monstrosities of the Willowbrook and Pennhursts which blight our history. Dr. Elks has proposed that institutions are a ‘meme’ running rampant through our society, spread across time and space, and re-occurring, seemingly spontaneously. He reminds us that Sarason (1969) warned us that “the beginning context is fateful for what comes later”, and Dr. Wolfensberger likened this to the ways that institutions, organization, and settings have ‘ghosts’ within them that will repeat certain ways of thinking and doing things (Wolfensberger, 1989) , a bit like there is a driver in the driver’s seat who no one sees or acknowledges.

One of the beautiful and terrible things about applying ideas, especially those ideas which center on people and their relations, constructs, and categoricals in a different culture is that you often get it wrong, and are forced to re-think and re-organize your assumptions.  Reading Elks’ article, and having several rich conversations with trusted colleagues have helped me struggle with this issue. So I am, as I often find myself,still confused, but hopefully on a higher level and about more important things.

In western societies, the term ‘institution’ and ‘institutionalization’ have a generally understood common meaning when used in the context of disability to mean a facility where people with disability are congregated together, often isolated from typical society, and are subjected to uniform procedures, and treatment which tend to be controlling, authoritarian, and de-individualizing.   Large residential facilities, nursing homes, psychiatric hospitals, and, often, boarding schools are considered to be such institutions.

In India, there is not a current consensus on the use of the word, or the concept, of institution. First of all, the word institution tends to be used in the broader sense, as “an established organization or corporation (as a bank or university) especially of a public character”  (Merriam Webster, 2016). In general, the value judgement inherent in the western use of the word in disability circles does not exist in the same manner.  Unlike most western countries,India has not (yet) experienced the large-scale, eugenics-based institutionalization of its disabled citizens, and the associated movement towards liberation from such places. Therefore, the work ‘institution’  is generally not laden with an association with abuse, neglect, oppression, and control as it is in other places.    One often hears that institutionalization has not been a significant factor in India’s societal  treatment of people with disability, and the word institution is used frequently to refer to any service organization.

However, it must be stated that there are indeed institutions in India, which fully fit the western notion of such places. Government psychiatric hospitals, hostels for both children and adults (and both together, sometimes) and beggar homes  exist in all population centers.  In a place where different kinds of disability are often poorly differentiated, people with mental disorders, physical disabilities, developmental disabilities, and autism are often lumped together in such places, and simply identified as ‘mad’.

If one decides to take a stand against such congregated service types, that no doubt have served a life-saving function (and may also serve a death-causing function at the same time)  there are implications. First, that person must realize that even such traditional institutions may well be, for many people, an alternative to almost certain brutalization, starvation, and death on the streets. This reality is one that advocates for alternatives to institutions must reckon with and come to terms with.

Then there are a host of other complications.  The western service models of supported living and small community group homes seem at times like a dangerous pipe dream in a country where communal living is the norm, and where there are precious few services at all, much less systemic integrated services. There are a host of services using relatively large congregate residential models which are being planned, conceptualized, and built as I write this. This is the direction India is going in, and it is a familiar one, fraught with problems and yet also an understandable solution (often handed over by western consultants) to families who live in terror of what will happen to their sons and daughters with disability where long-standing expectations of extended family-based life care is eroding fast.

It seems possible on the one hand to encourage and promote truly integrated Indian models which are highly individualized, life-giving, and are based in crafting desirable futures and facilitating informal support networks.  I have no doubt that this “bottom-up”, one person at a time strategy will play a powerful role in giving strong families and people with disability the confidence and experience to reap the benefits of such person-centered action strategies.  On the other hand, such seed planting will hardly address the needs of a nation with 1.3 billion people and no coordinated infrastructure for services and supports for people with intellectual and psycho-social disability.

There is likely a justifiable rationale in working with the new and emerging congregate model to raise awareness about the problems inherent in institutions – problems which already are plaguing such services such as de-individualization, to stave off the poor treatment that invariably occurs when devalued people are all together, apart and away, to actively promote and engage typical citizens in the lives of people in such facilities, and to promote entrance and exit routes to and from the service for the people living there, and for the surrounding communities.  Perhaps the lessons of moral treatment era can be brought to bear – communities which are physically attractive and promote engagement, a focus on whole-person development rather than a medicalized “cure”, a restoration of identity and connection rather than a solution to perceived brokenness.  If nothing else, one can select organizations to support and work with who are up to and open to the task of raising their own consciousness, applying keen and sharp eyes to the signs and effects contained within the meme of the institutional approach, and committed to working in service first to people with disability, and second to the organization and themselves.

Elks, M (2016) New quasi-institutions as examples of human service unconsciousness. The SRV Journal, 11(1),30-40

Institution. (n.d.). Retrieved September 13, 2016, from http://www.merriam-webster.com/dictionary/institution

Sarason,S. (1969) The creation of settings. In Kugel, R.B. & Wolfensberger, W. (Eds.) (1969). Changing patterns in residential services for the mentally retarded. Washington, DC: President’s Committee on Mental Retardation, 341-357.

Wolfensberger, W. (1975). The origin and nature of our institutional models (rev.ed.). Syracuse, NY: Human Policy Press.

A Declaration of Identity

“I am not a mental patient.  I am a secretary.  ”

Unnamed long-stay patient at government mental hospital

She has lived for decades in the institution, yet her yearning for valued roles, respect, and dignity shine though.  She sits in the back of a room, a tiny woman in a room full of professionals speaking articulately about the needs of people seen as ‘like her’. She rises when encouraged and asked, and if she had not been encouraged and asked, she would never have been able to create the space to express herself or be heard. She sits in her government-issued pajamas (one of three pairs issued by the government hospital)at this listening session, surrounded by esteemed people of relative wealth and relative power. She speaks with an astonishing level of clarity and courage to an issue near to my heart.  She speaks to the deep human need for place, for belonging, for rootedness. I am somebody, she tells us, I am MORE than my impairment.  I have gifts and contribution to offer.  My gifts are wasted as I sit here awaiting a chance for a new life. Her simple words, “I am not a mental patient, I am a secretary” speak volumes about the power and possibility of societal roles.

Dr. Wolfensberger spoke and wrote about role-avidity – the idea that people are hungry for social roles.  He spoke more powerfully of ‘role starvation’ for those deprived of such roles.  He speaks of ‘role famine’  for those living in a world destitute of valued roles and yet full of deeply devalued roles such as “mental patient”. In this moment in time, I am struck by the abiding truth in his conceptualization of the realities for deeply marginalized people. For me, this moment crystallized the translation of theory into the life of one woman trying to reclaim her history, her contribution, her identity.

This is a concept which may well belong in the realm of theory and academia, but is rooted in the experience of individual people who experience its terrible impact and its beautiful  promise of reclamation.

 

Curb our Enthusiasm

The new Mental Health Care Act, passed yesterday by the Indian parliament, has been winding its way slowly through the Indian legislature since 2013, and replaces the Mental Health Bill of 1987. On the one hand, advocates celebrate its passage, realizing that limiting the use of electro-convulsive therapy, addressing the immense shortage of mental health experts, decriminalizing suicide, increasing the legal autonomy of people experiencing mental health problems, and mandating that mental health services be affordable and available are parts of the picture.

The narrative that picture is embedded in is one that we should take a closer look at and consider.  It is the catchy narrative that explains mental disorders as a medical condition that requires specific address by treatment. A comforting and easy way to see mental illness, for those of us who like neat thought packages, as we tend to do. At its least nuanced, this creates a mental picture where we see a sickness, and see medication as the first answer, and confinement as a strategy while the medication is adjusted. Neat and clean.

Of course, simple solutions can mislead when the true problem is complex and hard to unravel, and, no doubt, the context in which mental disorders exist is truly complex.

If it is true that mental illness is inextricably linked to poverty, then this complicates the picture.  We know that people experiencing major mental illness are nearly always poor.  Do they become so because of the mental disorder, or does poverty “produce” mental disorder? The frustrating answer is, of course, yes to both.

If it is true that gender oppression is inextricably  linked to mental illness, the picture complicates further. Deeply devalued widows rejected by family and thrust out into poverty and homelessness, women subjected to brutality at the hands of family and strangers, and the picture blurs even more.

If it is true that performing jobs that are torturous for human beings to do, jobs that are reserved for the poorest of the poor, with little hope of relief, causes people to lose their bearings, retreat, and lose their clarity of thought and memory, again, the picture needs to be refocused.

The above inconvenient truths reveal that simple solutions to “bring people with mental disorders back on track” only address a part of the problem, and may create unanticipated problems, at least for affected people. If indeed, a society “manufactures” people with mental illness as a result  of poverty, oppression and associated brutal life conditions, at least in part, we need to keep that in our minds, and more importantly, our mindsets.

For me, it is helpful and important to remember and even embrace the complexity of the interplay between social and environmental factors.  The medical model of illness will never fully answer the question of how to address the big questions raised by the issues of mental disorders.

Meanwhile, people with mental illness languish in mental hospitals, beggar’s homes, and on the streets. We can celebrate a legal framework that offers people support, assistance, control, and recognition of their humanity and value.  There is something to be said for helping people to get “back on track”. Don’t think, however, that it will be enough.

 

 

 

 

Go Up

“When in doubt, go higher.”

Dr. Wolf Wolfensberger

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This was not advice about avoiding floods or choosing a hiking path. It was advice about our thinking.  When we are working with an idea, or a thought, or a phenomenon, or a struggle, we must strive to push our thinking to a higher level – to address universals rather than individual particularities. This was a great gift frequently offered by Dr. Wolfensberger to those he mentored and taught over his many years of change agentry around the plight of and possibilities for people with disabilities.  It has come into my mind many times this summer as we prepare to gather together a group of leaders in India to discuss, learn about, and push our own thinking about crafting a positive future by, with and for people with disability in India.

In just a few short weeks, a team from 3 countries will be introducing the core ideas of Social Role Valorization to India for the first time. A group or 40 or so leaders from across India will meet for three days to immerse themselves in the foundational ideas that have been so important to laying the groundwork for moving away from segregation and devaluation, and towards integration and full lives. In our preparations, the core trainers have been discussing SRV examples to illustrate the “big ideas”, such as the culturally valued analogue, role circularity, and the conservatism corollary.  Heady ideas, exciting, and ones that fit fairly “high” on the hierarchy of universals. They are also ones that we can easily illustrate and bring to life for Indian people from our years of work in the US, Australia, and the Republic of Moldova, respectively. In doing so, we risk the response earned by missing the nuances of Indian culture and society which will cause people to respond with “not here in India”. On the other hand, we can tailor our presentations to be specific only to India, and in doing so no doubt get it wrong in truly understanding what we are seeing and, perhaps “shoehorning” Indian experience into our own set of principles.

“Go Up”, we hear.  In this context, I think it means two things:  “Trust the Ideas”: Remember that the ideas we are teaching within Social Role Valorization are based on universal societal principles.  They matter and they apply wherever human beings live in community.  “Trust the People”: People have the capacity to interpret ideas, generalize them, adapt them and then make them specific to their own context when it makes sense to do so.  I look forward to what will be a potent mix of strong ideas, personalized illustrations, adaptations, and, I essence, all taking a leap of faith together. People matter, ideas matter, and, when we get stuck, we will “go up”.

 

A Thin Line

One of the challenges that the disability rights movement has put before us all is to see disability in the context of how society has created a somewhat arbitrary “line” between ‘disabled’ and ‘abled’.  We have been urged to see disability as a natural part of the human condition, with all people falling along that continuum at different places throughout life.  For example, we enter the world almost completely disabled, and many of us will become so again in our later years. In between, we all experience varying degrees of ability and disability, which really enters into a simple discussion of how much support do we need at a given time to negotiate the world.

To me, this gives a more satisfying way to think about disability and ability, and also helps undo some of the medical model formation that trains professionals (and everyone) that there are two distinct types of people –  ‘us’  (the helpers and so-called non-disabled people) and ‘them’  (the disabled people themselves). It was an uncomfortable way for me to structure my thinking at first, but over time I have come to appreciate it a great deal. It is much more nuanced and real to me. Fitting this in into our practice as professionals is very hard, though, because much of the traditional thinking around disability is at odds with this in significant ways.  In fact, it seems as though many professionals find it threatening.

Here in India, medical model thinking is an strongly embedded notion that is just now being challenged by those fighting for the cause of disability rights.  As has happened in many other places, this strong advocacy is led by people with physical disability, and is informed by historical civil rights movements all over the world.  There is a long way to travel for people with developmental and psycho-social disability, as there is for many other groups of marginalized and oppressed people. Mindsets run deep, but the conversation is moving, and the lines that separate people are a little less clear.

 

Great Questions, Answers that Matter

Judith Snow

“A great question refuses to be answered; so it keeps leading us into deeper connections with each other & into deeper thinking.”

– Judith Snow

 

Change agent, activist and friend Judith Snow once said this, and it immediately captured my imagination at the time. Over the years, it has become a powerful tool of practice for me. A rich set of questions can yield immense wisdom when asked of many people, with a genuine curiosity at the core of the asking.

When we first began to think about the work that needs doing in India around disability and equity, and there came an opportunity to do a part of that work, it seemed wise to begin with some important questions that will add richness to the understanding of both the “asker” and the “asked”.

And so has our work begun, not with answers but with 4 simple questions. These questions are being asked in 45 participatory sessions being held across India, and they are being asked of families, people with lived experience of disability, professionals, and everyday Indian people who might be described as community members. The answers to the questions are respected, recorded, captured, and shared back. They also begin to fill out the tapestry before we can ask other questions, the very first questions of service design, “Who are the people?” and “What do they need?”

The four questions which are grounding our work include the past, the present, the future, and the action. Each has profound importance. One cannot know where one is going unless one knows where one has been. One cannot establish a vision without an acknowledgement of the present. One cannot formulate action without sensing a sharp tension between what is “now” and what “should be”.  A discomfort and even chafing at the conditions of today propels us towards a future in strong ways.

The answers are compelling, profound, diverse, and slowly painting a picture of life, hope, change, and possibility, while acknowledging the hard and faithful work that needs to be done.

When we have asked these questions 45 different times, among 45 diverse groups of people gathered in meeting rooms, offices, conference rooms, and wherever people can carve out a space, we will pull together these expressions of pain, knowledge, wisdom, hope, and, yes, direction, into a single snapshot which will boil down this work into one rich view. This informs the work of Keystone Institute India, can inform the work of many others, and will in some sense cause change simply by having asked elegant questions that echo in people’s minds and hearts for a long time.

“What is the HISTORY of people with disability – in your society, your neighborhood, your community, your family, your life?”

“How are things NOW?”

“What is the VISION for the future?”

“What ACTION must be taken to make that vision a reality?”

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One of the most profound moments came for me, as a facilitator, when 12 men and women, all currently institutionalized in government mental hospitals for decades, came to a session and told us of their realities. One man simply stated, “While we have been here for 15 years, the world has changed, but we have not changed at all”.  This observation brought a hush to the room, as all 35 strong of us realized that one of the profound impacts of segregation are the discontinuities with the outside world which get created. Everyone in the room- professionals, families, and others were immediately able to feel the visceral impact of what it means to be rendered an alien in your own culture through having been separated in a timeless, changeless world where you are frozen in time. If we want to do right by people, listening to their experiences of the past, present, and future matters a great deal. Listening is a part of the process, and it may be a part of the solution to the problems of discrimination, marginalization, and oppression as well.

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Who could have imagined?

Who could ever have imagined this moment, given the 50 year struggle to assist people with intellectual disability to take their place at the community table in the United States?

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It is May 7th, 2016, at the Millersville University’s graduation ceremony. It is time for the “Student Address”, delivered each year by a graduating student who exemplifies the university experience. Daniel Castellanos, university student, soon-to-be graduate, theater major, actor, campus activist, and now, commencement speaker, walks to the podium with an easy confidence. He is the very picture of a young man full of promise, and with just the kind of swagger reserved for the young on the exhilarating edge of anything-is-possible.

He begins his speech with a small joke, delivered easily and with charm, and loosens up his audience of regalia-clad faculty and classmates, and their families. He’s a natural.  Daniel delivers a powerful take-home message of exuberant joy and promise for the future. Just the thing to start out this ceremony, which marks a major life moment for each of the students who will take the stage and receive their graduation honors on this day. Cheers ring out – Daniel is one of their own, and stands with his classmates and proud faculty on the verge of possibility – the good things of life are not only possible, but probable and within reach for each of the students, and they know it. Indeed, Daniel is one of them.

Daniel spoke openly and honestly of his intellectual disability as a simple fact which makes up a part of his identity, but it is clearly only a part of who he is. In this company, it seems almost incidental. Hard to imagine that this man spent his elementary, middle, and high school years in segregated classrooms for at least a good part of the time. As for all the students, university success leads most students on a path that is different than they would otherwise have experienced. For Daniel, this is particularly poignant and meaningful.  For Daniel, university success may well mean a path away from ever being defined by his disability, a path away from lifelong client-hood and into lifelong citizenship. For those of us who get to bear witness to this small but exquisite moment, we can see the fruit of our hard and faithful work in some way.

For me, I take heart at the small, exquisite moments that are mostly unheralded but that signal the changes which are stirring within India as the promises made to India’s disabled citizens and their families begin to take root and grow.  I think of the men and women across India  in mental institutions looking with hope towards gaining their freedom, the families who are striving to create a secure future and a decent education  for their children, and the people themselves  struggling to find their own voice and be heard.  We must approach this work of building an inclusive community with pragmatism and grit, but also with unreasonable hope that the extraordinary will happen.  Thank you for this message, Daniel.